Irritable Bowel Syndrome (IBS) and Inflammatory Bowel Disorder (IBD) get lumped together quite often. They have extremely similar names. They do have a negative effect on a person’s bowels. They can and do cause a lot of anxiety. But, other than that, they have nothing to do with each other. Literally have nothing to do with each other. These are two completely different illnesses.
One of my good friends, Megan, is in the November issue of Womens Health Magazine which I picked up yesterday. I mentioned very briefly in “my story” how I got involved with the organization, Get Your Guts in Gear, and was finally able to embrace my community. It all started with this girl. Megan is a co-founder of The Great Bowel Movement. Org and also has a facebook page where people can ask questions, talk about their stories, and connect with others who understand what they are going through. I wrote something on the page at one of my first attempts to see that I wasn’t alone. I honestly don’t remember exactly what that was, but I do know it had something to do with how I was a competitive swimmer and how IBD affected that. It then opened the door for Megan to talk about her feelings when it came to IBD and running. We have since became good friends and I don’t know what I would have done if I hadn’t met her. She has told me numerous times that she felt like helping others who struggle with IBD was her purpose in life. Megan is a true inspiration to all of us and someone who I sincerely look up to.
As I began reading the article in the magazine, I was looking forward to hearing more of Megan’s story along with some other scientific and medical data thrown in. However, the article was very different from what I expected. In the beginning, it discussed how Megan was having some stomach issues and her friends thought it might be related to stress or some other emotional things. It paved the way for the rest of the article which was about the mind and gut connection. It talked about IBS, IBD, and also just your other random tummy troubles. It focused specifically on eating and the types of foods we put in our body, how we handle stress or any other kind of emotional issue, and just how connected the mind is with our gastrointestinal system.
Over the years, I have done a lot of research on the mind/gut connection and my doctors have even told me that once a person has Irritable Bowel Disorder (ulcerative colitis and crohns disease), that stress can aggravate it. At my very first appointment with my second gastroenterologist, the first thing she said to me after reviewing my records was “You will hear a lot of things about IBD. You will hear that you got it because you are a stressed out person. You will hear that people can relate because they have IBS and know what it’s like. Marisa, I hope you know that those are some of the biggest myths about IBD out there. If someone tells you they have IBS that is awful but has absolutely nothing to do with your situation. Stress can cause a flare up once a person is already diagnosed, but stress and food and all of the things you are going to hear when you speak about this disease are not correct. You really need to understand that.” When she said these things to me, I didn’t understand it. I didn’t really understand any of it. But, I do now.
The two most commonly known forms of IBD are crohns disease and ulcerative colitis. Both of these illnesses cause damage to your intestinal track. The amount of damage and scarring varies from person to person but IBD can and often does cause a lot of harm to a person’s intestines. Medication can definitely keep symptoms at bay. Eating foods that are easier to digest can be very beneficial. But, for many people, medications and diet change are simply not enough. For many people, medication and diet change does nothing. The people who can control their IBD through diet are lucky. Very lucky. The people who can control their IBD through medications are also lucky if they are on something that is well tolerated and doesn’t impede on their lives very often. However, in my case, all it did was give me the illusion that I had some control over it. There was no way in hell I could get away with controlling my ulcerative colitis through diet and I did everything I could to make the medications work as affectively as possible. But that wasn’t enough. I needed surgery and I would have most likely died without it.
Irritable Bowel Syndrome is very different. It causes pain and either constipation or diarrhea. It can definitely have the associated anxiety affects since it is bathroom related and medications do often help ease a person’s symptoms. However, IBS doesn’t do any damage to the intestines. There is no surgery involved at all because a person with IBS has intestines that look and are functioning fine.
I don’t really understand why more people don’t see that there is a huge difference between IBS/occasional tummy troubles and crohns disease or ulcerative colitis. I have had 14 major operations, too many procedures and tests to count, and have spent over 300 nights at Mt. Sinai Hospital. Would I have done that if all I needed to do was change my diet and exercise more? Don’t you think that I would have been very open to trying every single possible diet change out there to avoid surgery and feeling like a prisoner in the hospital so frequently? The answers to both of those questions are obvious and I did literally everything in my power…including many specialized diets. They all did nothing and I have had to endure more pain than anyone who hasn’t experienced it can comprehend. It really bothers me when the severity of crohns disease and ulcerative colitis is minimized. And I feel like that is happening more and more each day.
I am really going to think hard about how I can share my story with others because I feel like the public is extremely misinformed. I watched a couple segments about IBD on a few local news channels when there was a fundraiser nearby, and if I knew nothing about the disease there would be no chance that I would donate one penny to the cause. It all just sounds like no big deal and because you don’t really see someone with IBD at their worst, no one really knows what a person with ulcerative colitis or crohns disease has to go through day in and day out. I am going to try and be a voice for all of those people who are suffering and try everything in my power to make sure we are all as educated as possible. When the media misinforms the public, patients suffer. I suffer.